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Cataplexy With No Trigger

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I'm posting this here because the cataplexy forum seems to be dead. Anyway does anyone ever have an attack without a trigger? This morning I got out of bed walked 2 steps then my right knee buckled, I tried to grab something and shift my weight to my left leg and either it buckled too or I was off balance and I fell. I have no idea what triggered it. (I have a dx of N&C). I've been really stressed this week but can cataplexy be caused by generalized stress? Thoughts and experiences would be appreciated.

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Hello!

I was also diagnosed with N/C and I have to say, yeah, I've had plenty of attacks without triggers...or at least I don't know what the triggers were. I've also have attacks that I think fall under generalized stress where it feels like the trigger happened long ago but the lingering stress of the situation is what eventually caused an attack. Still, ever since I started treatment, most of my attacks have been trigger-less.

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Stress can definitely cause some random attacks! Long before I had my Dx I had these random times where I would be in a public place... I had social anxiety then... and I would have to grab hold of my boyfriend at the time and he would carry me where I could sit and lean on him till it passed. Also around this time, I would be hanging out with the same ex-boyfriend and I wasnt a fan of a few of his friends... well needless to say it happened many times around them. He thought I was making it up (being dramatic) I only recently realized its been C all along!

The more stressed I am not worse my C is. My norm episodes are very very mild. Like if I get scared (i scare easy) my legs buckle and I either fold at the waste or grab onto a wall ect. only last a quick moment. Does take forever to get balance and my heart rate normalized.

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Most of my attacks have a known trigger - usually intense emotion. I don't experience these too often (thank goodness!) but I do experience what I can only describe as cataplexy upon waking up. Because I don't think it's sleep paralysis (which I don't experience very often). When I wake up, if I'm still extremely tired, I find it almost impossible to lift my head, or my limbs. I can do it but only briefly before my head or limbs fall back to the bed.

I have experienced being waken suddenly, and jumping out of bed, only to be able to take a step before my legs give out and I fall. I asked my neurologist and he said it might have something to do with sleep paralysis. But from what I understand, C and SP are both where the chemicals in the body are confused about the state of wakefulness. So it will either paralyze you completely or kind of have a shortage? I'm not sure. But I think that it's quite possible that if you have a C attack without a known trigger, it may be that your body is confused and trying to send you in to REM.

Were you tired during any of these attacks? Had it been a while since you had slept/dozed/napped? I find that these are the times I experience C the most. I also feel extremely weak after waking up from sleeping. Like I'm awake, and CAN move, but my body is still adjusting to being awake. So normally, if I am tired and kind of dozing, or if I'm wake up from sleeping, I just lay in bed for a few minutes to let my body wake up. (Sometimes, this can be an issue though if my mind isn't quite awake either yet, as I become prone to falling back to sleep!)

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I'm posting this here because the cataplexy forum seems to be dead. Anyway does anyone ever have an attack without a trigger? This morning I got out of bed walked 2 steps then my right knee buckled, I tried to grab something and shift my weight to my left leg and either it buckled too or I was off balance and I fell. I have no idea what triggered it. (I have a dx of N&C). I've been really stressed this week but can cataplexy be caused by generalized stress? Thoughts and experiences would be appreciated.

General stress makes my C more likely to happen. Kind of like the last straw.

Cataplexy is a bilateral loss of muscle tone. So if your right knee buckled, so did your left knee.

I recently figured out that "hurrying" is a trigger for my Cataplexy. I am a runner. But every time I rush through the airport, my legs just don't work right. I could never figure out why I could do a long run at a fast pace, but couldn't get from the parking garage to the check-in counter without stumbling.

Cataplexy is like solving a mystery that I have lived with for so long- I just stopped questioning it and lived with the mystery. I still live with it, but I ask more questions and it still manages to be a mystery. I just know who dunnit.

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Thanks for the fast replies everyone! To answer your question exanimo: I had literally JUST woken up. I think I got about 8 or 9 hours of sleep and I can usually function pretty well on that.

The stress thing explains alot. I never experienced severe cataplexy until I came to this school and started getting freaked out by the people and the classes. Before then it was just a mild weak "feeling". I actually think I was starting to cause them for a bit because the more I worried about having an attack the more attacks I would have. Like a weird anxiety cataplexy cycle.

Although it could be something that was just going to happen anyway as I now fall over when I laugh and that never happened. Being suddenly surprised doesn't trigger it at all though, but getting really nervous or angry does. I don't really understand it.

Good to know that people have it from general stress/social anxiety though.

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I too have had attacks without any known trigger, and I really believe it's more common when I'm tired and stressed (which is unfortunately often because I'm the mom of a 2-year-old, trying to make ends meet on a freelancer income, etc..).

I've had NC since I became pregnant, or at least that's when symptoms became obvious to me. Now it's progressing fairly rapidly to the point of needing three naps a day...and that's WITH Nuvigil (which I get from Cephalon Cares Foundation).

I don't have insurance since my husband works part time and I have been denied due to a pre-existing condition (not NC)...I am sure I could get insurance now without being denied...if I could afford it!!!

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I recently figured out that "hurrying" is a trigger for my Cataplexy. I am a runner. But every time I rush through the airport, my legs just don't work right. I could never figure out why I could do a long run at a fast pace, but couldn't get from the parking garage to the check-in counter without stumbling.

This is so me! And its when I drive... If I am late to work (I can be late no punishment no dirty looks) I just like to be on time lol... any how I drive a stick, and it sucks!!

If anyone is looking to buy a car and has C DO NOT BUY A STICK SHIFT!!!!!!!!!!!!!! Worse idea ever!

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My guess would be there is a trigger somewhere. I have pretty severe cat. and my triggers are pretty easy to spot and intense emotion is one of them. But other triggers can be a little more trickey. Cataplexy still amazes me, and we're not going to learn much more about it because there is no money in researching it. Same goes for N for that matter. If I were you I would document when it happens, then write a description of what was going on just prior to onset. Were you rushed, angry, stressed, write it all down no matter how trivial it may seem. My guess would be after 30 days, you will see one common culprit amoung them. Best of luck to you.

BD

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I'm posting this here because the cataplexy forum seems to be dead. Anyway does anyone ever have an attack without a trigger? This morning I got out of bed walked 2 steps then my right knee buckled, I tried to grab something and shift my weight to my left leg and either it buckled too or I was off balance and I fell. I have no idea what triggered it. (I have a dx of N&C). I've been really stressed this week but can cataplexy be caused by generalized stress? Thoughts and experiences would be appreciated.

That's exactly what happened to me last night at work! I've been diagnosed a year without having symptoms of cataplexy but all I know is for a second there something weird happened and I basically fell on one of the tables at work. D: Is that what one would consider cataplexy and also I have pretty intense stress as well. I was also just put on 150 of nuvigil if that'd make a difference.

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My general weakness or weakness in selective parts occur both with and without triggers. My full body collapses, paralysis and seizures seem to only occur with triggers, or so far that I've noticed.

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My general weakness or weakness in selective parts occur both with and without triggers. My full body collapses, paralysis and seizures seem to only occur with triggers, or so far that I've noticed.

I had my first real cataplexy last weekend. Before, I've had periods of muscle weakness, particularly when having to exert my legs (climbing stairs, carrying heavy objects, etc), but this was something new. Anyway, umm, how shall I put this politely...I was spending some "quality time" with my significant other, and, afterwards, I went to get up to take my sleepy time meds and my legs buckled and I had to kneel down for like a minute. Freaked the poor thing out :(

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I had my first real cataplexy last weekend. Before, I've had periods of muscle weakness, particularly when having to exert my legs (climbing stairs, carrying heavy objects, etc), but this was something new. Anyway, umm, how shall I put this politely...I was spending some "quality time" with my significant other, and, afterwards, I went to get up to take my sleepy time meds and my legs buckled and I had to kneel down for like a minute. Freaked the poor thing out :(

I have heard of that happening to some ladies as well... pretty normal!

I had my full body C a week or so ago... first time since my Dx, Had them happen maybe 3 times in the past when I was 18/19 so 10 years later... my brother scares me and down the stairs I fall <_<

I hope and hoping that doesnt mean my N is getting worse... dont think I could take that!

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I had my first real cataplexy last weekend. Before, I've had periods of muscle weakness, particularly when having to exert my legs (climbing stairs, carrying heavy objects, etc), but this was something new. Anyway, umm, how shall I put this politely...I was spending some "quality time" with my significant other, and, afterwards, I went to get up to take my sleepy time meds and my legs buckled and I had to kneel down for like a minute. Freaked the poor thing out :(

The same thing happens to me! Especially after a particularly exhilarating session. It even happens to me during sometimes.

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The same thing happens to me! Especially after a particularly exhilarating session. It even happens to me during sometimes.

Well I guess it's nice to know it's not a unique symptom. Maybe this is for the best anyway. Since I've been feeling more and more emotionally numb lately (not sure if it's the N or the stimulants), I've been becoming a whole lot more sexual than I've ever been and I'm ashamed to say I'm starting to become a bit of a shallow d-bag. I think no longer being overweight has also contributed to negatively impacting my personality in this way. Maybe this is just the push I need to focus on other ways to spend quality time with her, other than just the physical stuff. Stiff upper lip, glass half full, sliver-lining, and all that jazz. Trying to see the good side of a bad situation. :(

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Well I guess it's nice to know it's not a unique symptom. Maybe this is for the best anyway. Since I've been feeling more and more emotionally numb lately (not sure if it's the N or the stimulants), I've been becoming a whole lot more sexual than I've ever been and I'm ashamed to say I'm starting to become a bit of a shallow d-bag. I think no longer being overweight has also contributed to negatively impacting my personality in this way. Maybe this is just the push I need to focus on other ways to spend quality time with her, other than just the physical stuff. Stiff upper lip, glass half full, sliver-lining, and all that jazz. Trying to see the good side of a bad situation. :(

Not necessarily a bad thing if you do care about her. The memories of pleasant shared experiences is intimacy in itself.

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Not necessarily a bad thing if you do care about her. The memories of pleasant shared experiences is intimacy in itself.

I do love her a lot; that's not in question. It's just lately, it feels like there is a thick fog between me and my emotions. I have to try really really hard to feel things. I used to be overly sensitive. Now, I've gone too far in the opposite direction. It's also possible I'm just getting world weary and cynical. A different girl last year pretty much snuffed out all the idealism I had about love. So I've had to recover from that. It's hard to tell what in my life is a result of N or is actually really coming from me and my experiences. But anyway sorry for the threadjack with my emo BS, lol.

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i am perimenoposal and have narc with cat.  had cat attacks during sex and after...some even before because i get so worked up of being afraid that i would have an attack. sorry to say, wish it was under different circumstances but im glad im not alone.

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I thought this was a normal thing! The sudden slack weak muscles from a great roll in the hay never seemed out of place. The phrase "weak in the knees" had me thinking the loss of muscle control went hand & hand when having sex with an intimate partner. Recently I asked 5 good friends if they experienced extreme muscle weakness from orgasms. Lots of good jokes but no one knew what I was talking about. 

 

I still wasn't going to mention this to the doc because it's the only time I have extreme loss of muscle control, and I don't have it nearly as often or as severe since going on mod-high dose of zoloft 2 years ago. But I definitely need to put this on the symptom list. 

 

So glad someone brought this topic up!!  

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My gf would kill if I she knew I told this, but she doesn't have N, and she also usually can't walk for at least two minutes after. Also, her legs sort of jerk and spasm randomly. So maybe it's not something every female has, but it does happen, I can confirm a case of a healthy sleeper with this symptom. I am jealous of her sleep prowess. She can nod off instantly when it gets time for bed, but she can wildly fluctuate her schedule and get only 8 hrs of sleep and feels great. She also occasionally becomes a Kung-Fu master in her sleep, lol.

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Thanks for the input. Hope she doesn't find out but it is helpful for me to have a bigger survey size. As rolling the hay is the only time I've experienced cat-like symptoms at the level that scared me. The falling plus the face slacking to where I couldn't say "help i'm falling." I just really struggle with validating those feelings and symptoms.

My boyfriend is luckily someone who needs more sleep than the average folk. So more time together on my turf. But also I'm jealous, too of his ability to feel better after sleeping or taking a nap. 

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You are most definitely not alone.  It even has a name:  orgasmolepsy, or the presentation of cataplexy during orgasm.  It happens to me, to varying degrees... sometimes barely or not at all, and sometimes it's like my full-on normal C.

 

It's very noticeable when you're... how to put this tactfully... by yourself.

 

As far as the thread topic, for me, I am pretty sure my C always has triggers.  The worst is anger.  And its presentation is interesting.  It's not the thing that makes me angry that does it, it's me expressing my anger.  The more intense the expression of anger, the rougher the C attack.  Example of mild:

 

Child leaves backpack in the middle of the kitchen floor.  Did it last week too.  I call child into the kitchen, and if I let myself get mildly angry while lecturing I'll get a little droopy (non-intense, maybe half a second C, sometimes the kid notices).  Have to be stern but CALM.

 

Example of bad:

 

God damn dachsund eats another shoe, half of a brand new pair, we're easily over $1000 into this little fetish of his.  I scoop up the f****er and yell at him as I am escorting him outside and I have to stop and lean against the wall or fall over.  Or get in an argument with GF over something and feel really angry/passionate about a response I am making.  Arms fall to sides, speech slurs, knees start to buckle, need to lean on something.  If I force myself to be calm it stops, but if I try to maintain it (the anger), then I'm fighting against the C and losing.

 

I do try to fight against it.  Feel it coming on and try to retain control of my muscles.  It's not very successful.  When fighting it, the best analog I could give is that I feel like a gear missing every tooth but one.  So I try to fight it and I can't; the gear is just slipping, but then it grips for a fraction of a second, which manifests as a sort of twitch, but then I have no muscles again.

 

I do think that some days I am more prone to C than others, and, if this makes sense... I can sort of feel it waiting in the back of my head/neck.  Maybe that sounds weird.  But I can say that if I have C happen today it will be of middling intensity.  I think the intensity is linked to how well I slept the night before.

 

For me, cataplexy is not muscle weakness.  It's muscle absence.  It's as if the affected muscles are just not in my body anymore and I start to fold.  It's getting worse too.  I hate it so much.

 

Other, milder triggers are funny things - it's got to make me belly laugh and then I experience it mildly - orgasms as mentioned above - anticipation and then realization of something exciting - like standing at the edge of a doorway to scare my friend and then scaring him and C'ing as we laugh about it, mildly.  Making an unanticipated witty comment that people laugh at does it a little bit too.  I do a lot of public speaking and if I am in that zone, I can be funny and off the cuff and there is no problem.  It's when I am, say, sitting in a class for training at work and something funny pops into my head and I say it and people laugh - get C then.

 

Such a crazy crazy thing.

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I get "that" feeling/sensation in the back of the head too...in the area just where your skull joins the spinal column. I know it's gonna be a bad day while waiting for the inevitable to happen. My C always has triggers...laughter(mirth),sadness,anger,fear (like being startled by a firecracker going off or a sharp crack of thunder). Once the C has happened, the sensation goes away and I feel immensely better.

Never had an attack after orgasm...perhaps because mornings are best for me and that's when we usually do it.

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my C attacks are bad with my emotions.   my boyfriend had me laughing so hard that i had an attack.  anger...oh jeez..dont get me started with that one.  My anger gets me in trouble with my C every time.  and with it comes a seizure.  was just in hospital theother nite because i had fallen from a C attack the night before and my head didnt clear up..got to the hospital and had two C attacks and seizures right in a row.  found out i did have a concusssion and i have degenerative arthritis in my neck because of the seizures causing me to have whiplash...

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Do you think it's possible the head trauma could have caused the brain damage require for N? Also, have you tried lamictal. I've had some help with N symptoms and I've got an epileptic friend who is on it, and since then she's only had one petit mal seizure.

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